SULLY-based Ty Hafan has been forced to prioritise families with immediate need – meaning respite care for families has been cut in half.

The children’s hospice is almost entirely funded by public donations.

The Welsh Government said it was discussing funding needs.

Director of care, Carol Killa said: “There are two things that always surprise people who come to Tŷ Hafan.

“They often expect a children’s hospice to be a sad and difficult place to visit, but that absolutely isn’t the case.

“Our hospice is an incredibly happy, supportive and vibrant place, full of fun and laughter.

“The second thing that shocks people is the level of support we receive from government – about five per cent.

“The vast majority of our funding comes from public donations.

“When you tell people this, you can see them look around at the staff, the hospice grounds and the incredible equipment we have for our young people and they wonder how that’s possible.

“The truth is that it is really difficult, and it is getting harder.”

Ms Killa said the care the charity provides now far exceeds what it was originally set up to do 20 years ago.

She said: “Children are living longer with more complicated conditions, and that means more investment in staff, training, medicine and equipment.

“More money needs to be found to ensure all our children can lead the fullest lives possible.”

She said she didn’t believe the Welsh Government was blind to these new challenges, and the health minister was a frequent and supportive visitor to the hospice.

She said: “Unquestionably, the funding agreement for children’s hospices is in urgent need of an overhaul.

“Not least because so much of the care we provide – in homes and hospitals, as well as here in the hospice – are things that people have a statutory right to receive.

“That means they should be paid for by Government, not public donations.”

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